The 100 LEADERS Project – Stories Of Living

Michael told his story during a conversation between the project researcher and himself. The conversation was recorded and transcribed.

Introduction

Work has always been important to me. I saw from an early age that work was quite defining in our society. I believe it defines whether or not people have respect for you and respect for your abilities or whether they tend to see you as being a burden and so I’ve always tried to ensure that I am a person who is contributing to the community as a whole and am seen as such by people who may have a limiting view of persons with disabilities.

Following a workplace accident in the early 1990’s I currently use a manual wheelchair for mobility and have used wheelchairs for mobility on a fulltime basis for over 20 years. I was born in 1951 with a diagnosis of Muscular Atrophy that significantly physically impacted on me from 3 years of age. (I have a diagnosis of Charcot-Marie Tooth syndrome that includes CMT [1] and also other types of CMT). The impact of CMT can be anything from weakness in the ankles through mild impact on either the hands or feet to more severe impact on the extremities including both the arms and legs which has occurred for me.

Somebody could have CMT and may only notice that they occasionally twist their ankle more than others or it can impact where it may be necessary to wear calipers and surgical boots as well as requiring the use of aids such as walking sticks or crutches to ambulate. CMT can at times impact hearing or the diaphragm. I also experience those symptoms as a mild impact.

CMT is a progressive neuro-muscular condition that for me has meant a constantly changing and evolving life.

Education and learning

I’ve always been a prolific reader. While spending much of my youth in hospitals reading was a great thing for me because at that time in the 1950’s and 1960’s there was no such thing as schooling in hospitals as occurs these days. My learning at that time came from my reading books on my own and listening to the life stories of the adults who I met in hospitals and elsewhere. I continue to have a great interest in reading and listening to people as they impart their knowledge. I read everything, it doesn’t matter if it’s a label on a packet or whether it’s a history book or an autobiography, I read it to try and get more information and increase my knowledge.

I attended 14 different schools in the time I was doing my schooling and although I missed something like about 4 years of formal education where I wasn’t in school I matriculated in 1969 and achieved my Higher School Certificate at a level where I won a scholarship to go to New England University. Ironically despite my academic results I was unable to take up the scholarship because part of taking up the scholarship required me to pass a medical examination and the doctor who did my medical was of the opinion that my physical health and thus study capabilities were not up to my being medically suitable to attend university. In defiance of his medical report I commenced fulltime employment in 1970 and continued to undertake fulltime work until 2014.

Marriage and family

My wife and I married in 1975 and will celebrate our 40thanniversary in 2015. We have 2 sons and at the moment 7 grandchildren. I was relieved and excited to learn that my sons who were tested as young children did not have the CMT gene passed on to them which means the CMT history in our family stops with me and will not reappear in future generations .

My father had CMT as did his father and we understand through family stories that my great-grandfather also had CMT although the syndrome impacted each of them differently. My father’s life story is that CMT didn’t have a significant impact on him until his fifties but the impact of CMT was increasingly aggressive from his late 40’s and Dad had to retire early because of the impact of CMT on his fingers and hands and later in his 70’s the impact on his feet and legs reduced his ability to access the community. My Grandfather also experienced the impact of CMT later in life rather than as a young man. I didn’t grow up fearing CMT would negatively impact or restrict my life. From three years of age I experienced some walking and balance difficulties due to CMT and learned to navigate around many of the impacts from an early age including hand eye coordination, hand muscle tremors and mild weakness in gripping with my fingers. The various impacts were just a part of my life and I never thought of those impacts imposing limitations on what I could do or should achieve. I always saw myself as the standard benchmark for normal and kids who could do things like run jump or skip as being extraordinarily gifted.

Physically I was always able to find a way to do heavy work such as fencing, wood chopping, animal husbandry etc until the early 1990’s when I had my workplace accident and the impact of that injury has prevented me from being able to do simple household things like mowing the lawn and that type of stuff. These days my wife certainly does quite a number of things that I assume probably don’t necessarily occur for other women in relationships such as heavy lifting, house maintenance and things like that.

A Home of our Own

We purchased our first home back in 1978. I have always been employed and in order to have a full career I moved around a lot with my employment so we have had homes in various places throughout Victoria and NSW.

The current house that we live in we purchased in 1997 and over time have had it modified so that I can get in the front door but instead of having ramps I’ve got it done in such a way that most people wouldn’t recognize that they’re walking up a slope and coming to our front door. I’ve always tried to make effective modifications that facilitate access with the least visual impact. Living in the house itself the primary change would be the accessible bathroom and just turning the main living area into an open space rather than having a number of rooms like separate kitchen, dining room, lounge room, laundry etc.

Employment

I commenced working in 1970 with a firm of Accountants that later became known as Price Waterhouse. I worked with them as a taxation consultant and an auditor for a number of years and in 1974 I went to work for Telecom Australia that is now called Telstra. I started with Telecom in Human Resources and later went into their Finance area including cost accounting, accounts payable and budgeting. While with Telecom I spent something like 13 years as part of their Regional Operational Management Team in country Victoria.

With the Accountants I used to do quite a lot of travel because a number of my clients were rural pastoral companies requiring me to travel to various small country towns in North East Victoria and South West NSW. With Telstra my role included covering country Victoria (in north-eastern Victoria and the western districts of Victoria) where I primarily worked out of offices in places like Ararat, Ballarat, Bendigo, Shepparton and Benalla.

I enjoyed the travel as I generally drove on my own and driving my own vehicle gave me independence. That’s always been the case – driving and travelling distances has been very, very important to me in terms of providing me with independence and in my opinion putting me on an equal footing with everyone else. As a matter of fact over the years most people have found that they were unable to keep up with the workload and hours that I was able to get through on a regular basis for many decades.

I am currently working as a consultant. For the last 17 years I worked as Regional Manager and a Director of Disability and Home Care with Family and Community Services in New South Wales until 31 December 2013. The decision taken by the NSW government that the FACS department was going to move away from direct service provision was the catalyst for my leaving the department. I shifted to consultancy work where I considered there was more opportunity for me to assist families and persons requiring support through direct service provision.

Barriers and obstructions along the way

Throughout my life I have been a part-time user of wheelchairs, crutches, walking sticks and calipers and experienced difficulty writing with pens using keyboards and even using knives and forks or picking up and drinking from glasses or cups. There have been many times when I found that from individuals and the community there were both physical and attitudinal barriers and blockages as I lived life as a child, teenager and an adult. It seems to me that as an older person those barriers and blockages are now even greater than what they were at some other times in my life. For example with schooling I found that the support was amazing from teachers and quite often to the point where I had to say “Thanks but no thanks” as I was offered the opportunity to NOT complete some tasks such as gym exercises or participate in sports.

My personal opinion is that my having a disability has been a positive rather than a negative influence for my development as a person who has respect for and an understanding of other people as well as a desire and commitment to make a significant contribution to my community

Inclusion and exclusion

I have a personal understanding of inclusion and also of how we as persons with a disability or from different cultural backgrounds often are not fully included in our community whether it be a school a town or a sporting body. The fact that you might be sitting out in a school or a shopping centre or living in a home in the community, or that you may be in an office doesn’t actually mean that you are a part of or included in the student body, the workforce or various other aspects of what truly makes up a community.

Since I was a child I have identified ways to include myself rather than wait for an invitation. There were and continue to be a lot of different barriers and things that could obstruct and exclude me from being an active participant in my community. As an example I was recently in Adelaide and I found that the physical access barriers there were in my opinion rather ‘over the top’. There were restaurants where they said that they were accessible and naturally I attended functions held at these venues. In one instance I was with a group and when I needed to use the toilet facilities was advised that the facilities in the restaurant were not accessible and that the only accessible toilet was external to the restaurant that required me to go out of the building in the dark of night down the long hill along a steep and twisty pathway that was exposed to the elements to eventually find an accessible toilet which was about 300 metres away from the front door of the 2 hat restaurant.

Later that week when our group went to another “accessible” restaurant, the staff didn’t know how to use a chair lift and the accessible toilet was packed to the ceiling with furniture, cleaning implements and other items to the point where I consider it would have taken them a good week to clear it out for someone to use the facilities.

I have travelled to South Australia a number of times and I am surprised that for a state that funds a statewide access committee and has a high profile physically disabled MP it has such poor physical access to public places throughout the state.

Rather than getting angry I prefer to try and educate people by discussing with them about what they could have done or what they could do in the future.

The future

If at all possible I want to be working through until my late 70s. Yet it is my experience that as a senior Australian I am encountering more barriers to employment than I had previously encountered over the last 40 years.

I find it very concerning that in my opinion these employment barriers exist particularly with organisations that are working with people who have disabilities. I am very aware that now through my 60’s and possibly in the future my 70’s I will have to revisit all of the internal strengths of overcoming barriers that I had successfully negotiated from my early 20’s through my 30’s and 40’s to mid-50’s.

Currently Australian government bodies and our general society promote inclusiveness for active older people by painting a picture that unfortunately leads to the exclusion of those seniors who do not fit the picture being painted. We see promotions and advertisements featuring the “healthy” 55-year-old plus running and doing their gym work. People who are using a wheelchair or crutches for mobility don’t fit the image currently being painted as representative of active ageing. Often as an older person with a visible disability we are now exposed to a double negative about how the community and employers see us and thus potentially devalue our worth and ability to contribute to society.

Other people’s perception

In general I find that the younger generations are very accepting and inclusive of someone who has a disability, welcoming them as part of their community and acknowledging that they have skills. My sons both work in the human services field and (along with their friends) have always considered the fact that they have a Dad with a physical disability as part of the norm rather than the exception.

My working life has allowed me the opportunity to manage and work with a wide range of people. For example as Regional Manager or Director of Disability I had 1000 plus staff who reported through to me across western New South Wales with the majority of those staff being frontline ‘hands on’ workers in the community. Over the years I have found that most of my staff were more likely to have a yarn with me rather than with other managers. I think frontline staff in particular considered that I would understand their situation, and those staff wanted to source knowledge from me about how to work with other people. Interestingly over the years I have found that there was more acceptance of me as a person and manager with a disability from frontline staff than there was from many of my peers or senior managers with regards to me being a manager who had a disability. I found that not only were my staff generally accepting of me being a person with a disability I often receive feedback that they consider my having a disability as being a positive in my approach as a manager.

My experience has been that people often consider that as a manager with disabilities I have been through the hard stuff and therefore I am someone they can talk to about things they are finding difficult to deal with. Also working in the disability field and in the aged care field I find that the clients and the families of clients are very much more likely to sit down and have a yarn with me. There is certainly also an expectation that I will do more so that means when you don’t have the budget or whatever there is at times probably more distress for clients or families when I tell somebody that I can’t provide them with something they are looking for because they know I will have exhausted all other possibilities before I come back to them. I consider it very important to build an honest relationship where people know that I’m doing my darnedest to get them what they need.

I continue to have a great ambition for what the NDIS may do for all people with a disability but I am also concerned that many of the organisations out there may, by not truly changing and or understanding what is required of them, actually restrict the actual outcomes and have a negative impact on how the NDIS will be implemented. Although the government and NDIA believe that people will have choice that was previously denied persons with a disability it concerns me if the monies are made available without the government and NDIA previously ensuring there will be a variety and a number of alternative suppliers of goods or services then the reality of the person with a disability having real control over their own life starts to diminish considerably. Unfortunately I believe this rather negative scenario may be the reality in rural remote regional areas.

Over the years the majority of my working life has been my being employed in and managing commercial business rather than the human services provision. I have worked in a variety of industries and as a manager for Telstra, manufacturing enterprises, wineries, etc. At Telstra I was in operations management which although customer service oriented also requires financially sound profitable decisions as is the situation for the other commercial entities where I was employed. In all these industries I found that there was positive acknowledgement of my skills and contribution to my various commercial business organisations. In my working life I was surprised to encounter greater negativity toward my ability as a manager with a disability from the senior managers and boards of management of community based organisations and government departments providing services in the disability, aged care, children’s services and family services fields than I had encountered in commercial businesses.

Unfortunately, I think that quite often in human service organisations where people have gone into management roles (or indeed other roles, whether it be as a counselor or case manager) they have come from the perspective of person with a disability being a client, someone that they are providing services to and generally somebody who they believe needs a lot of help, and as a consequence of their compassionate empathetic attitude they have difficulty approaching a colleague with a disability from the perspective of that person living with disability being a ‘person’; a person who has significant skills and knowledge..

No matter how managers and other staff in human service organisations may talk about you know ‘person centred service provision’, it is often a very, very blinkered way in which people look across the table of the boardroom to see their colleague with a disability and unfortunately the input from colleagues with disabilities is often met with closed minds and thus deaf ears.

A blinkered vision of person centred care

I believe that the primary point about support being “person centred” is that all people need to listen and then they need to have an understanding of what it is that they’ve heard. I can just give you a simple example if you like: As Regional Manager/Director I had 16 managers who reported to me and this example is not an unusual occurrence. On one occasion I had a manager who advised that the branch was ceasing a service for a client. When I discussed the situation trying to understand the reason for the decision I heard that the workers providing the service considered the client had become aggressive and too difficult to work with.

The person, the client, happened to be a lady who had previously been a business proprietor and also a very successful professional person who had MS. The lady had physically reached a point where she generally needed to use a wheelchair for mobility and was requiring some personal assistance with her various personal care requirements. On further discussion I came to understand that, on more than one occasion, after the client had been sitting waiting a number of hours requiring assistance to have her shower the care workers arrived at the clients home late in the morning and, as the care workers were working to a tight schedule requiring them to quickly move on to the next clients home, they needed to rush the lady into the bathroom and wanted her to walk into the bathroom quickly with their assistance.

I understand the lady, the client, as part of her routine had a preference for ambulating independently, while using a walking aid, to the bathroom and she pushed them away when they moved to physically assist her to the bathroom. As a result of what had occurred the care workers complained to the manager that the client was being physically aggressive toward them.

I find it very disconcerting that managers with staff providing personal care services are unaware of how important independence and dignity are to their clients and are often unaware of how disrespectful and demeaning a simple action such as rushing a person through their personal care routine can be to someone who is trying to maintain their last small piece of self; which includes self worth and self respect.

I believe it is extremely important that all people have an understanding that the impact of the how they treat people with disabilities can be so much more negative than the actual disability itself.

In the community and especially amongst employers I think that we don’t have enough people with disabilities out there talking about personal experiences and conveying the positive messages of their many achievements.

For example; I think in my promoting in the community a positive view of all persons with a disability it is very important for people to know that I’ve been employed for over 45 years full-time and be advised of the facts that I have been a manager of various organisations since I was 25 years of age – so almost 40 years as a manager – and able at management level to move from organisation to organisation and from industry to industry.

It is important to me to ensure that the general public know that with the right opportunities all people with disabilities are capable of achieving much more than many in the community anticipate and those who know me and my achievements recognise that I am not a “one-off” or unusual among persons who have disabilities!

A statement I read recently very succinctly sums up my thoughts that disability is still too often seen as a liability when it should be seen as an asset, in all facets of life. “Without [my] disability I wouldn’t understand half the things I do today. You grow, you learn and you suffer – and it gives you more understanding of aspects of this world.”

There must be so many stories, examples, out there in business and life in general that as advocates for persons with disabilities we need to get through to the entire community, particularly I think through to the decision makers whether that be somebody who’s a senior manager in an organisation, whether it’s somebody who’s a director, somebody who’s an architect or an academic!

All of these stories need to be put in front of the general community and decision makers like our various members of parliament. People need to be exposed to the fact that people living with disability contribute to their community. To date I have been disappointed with the “missed opportunities” of the NDIA… the agency itself for not being the employer flagship promoting the abilities of people with disabilities. While I recognise that as a government entity it has many recruiting constraints it is disappointing that, from what I am aware, few of the people in senior management roles have “true” personal experience of disability.

Unfortunately as a society I don’t believe that we are able to see persons with a disability as whole persons who experience and should experience the full gamut of life, emotions opportunities and responsibilities as full members of our society.

When I first changed to working for a government department after previously working with non-government organisations, I asked about things like you know what was being done regarding support for people to have a full relationship and express sexuality etc. And I was immediately told to be cautious with that line of thought because it could cause public concern and possibly generate political issues.

Personally I find there is often lack of understanding that how people living with disability might feel about themselves and often the person with a visible disability is overlooked in deference to their companion who may not have a visible disability. For instance, I might pay at a register after having purchased something and the attendant will hand the change back to my wife. I have had instances where I put in the pin for the plastic and the attendant actually starts to hand the plastic card back to the person who is with me rather than to me.

Over the years I have attended a number of different conferences as a senior executive where I have had managers or directors from other organisations make the assumption that I must have been at the conference as a ‘consumer’ rather than as a service provider. Not all that long ago I had one chap actually come up and pat me on the head and in a patronising voice similar to that some people use toward young children ask me how I was enjoying the conference.

My belief is that if people at the top are acting and behaving inappropriately it absolutely always seeps all the way through to those staff who may be providing personal care and support: In situations like that the organisation may have careworkers with the technical skills, knowledge and ability to complete their tasks but it is important for management to be aware that the mindset of workers when delivering a service as important if not more important than their skills and technical knowledge.

Expectations

For me having had a disability right from a young child I grew up in a large family with a Mum and Dad who expected me to achieve and who expected me to do everything that all others could do and so I guess there was no such thing as “Michael doesn’t have to do that because of”. There was always an expectation right from the word “go” that I would complete my schooling, I would get a good job and I would contribute to the family. Those expectations became a part of me and I believe I have fulfilled them.

For example, I used to compete in the running races at the small schools I attended. I always competed in the age group running races and usually at the schools parents stood down one end and held a rope across the finish line so the competitors could breech the tape. I used to compete in my age appropriate race and as I said the parents would pick the rope up and hold it across the finish line. After everybody had gone through they’d pick it up again and hold it up. One of my ambitions for the entire time I was at primary school was that I would get to the finish line before they had the opportunity to pick up that damn rope for a second time. I guess that has been my attitude with many things, I just keep on having a crack at it until I succeed according to the personal goal I set myself.

I am not unique there are plenty of people who have resilience. I think it’s also a case that there has always been someone in my life that has been a positive influence. When I have encountered challenges or obstacles and then gone back and spoken about them with my family, my wife, my friends or my colleagues not once have they said “Oh that’s terrible” or tried to find an excuse for me not to succeed. It’s always been a case of “we know you can do that” or “we know that you’ll get there.” I think having a positive voice around you is what helps to build personal resilience.

In building a career and maintaining my employment I always look for a way to demonstrate what I can do. For instance I won a job as Human Resource Manger when I was with Telstra. The men who were to be my managers hadn’t been on the selection panel and hadn’t met me. I turned up at my work place and although I have only been using a wheelchair on a permanent basis since my accident in 1994. On this occasion back in 1975 I had temporary need to use a wheelchair and consequently was using a wheelchair for mobility when I met the person who was going to be my boss. His face nearly fell through the floor and then he told me about the fact that he was concerned that he couldn’t have me working for him because I might fall out of my wheelchair and hurt myself.

Rather than using the complaint system to force the District Director to allow me to take-up my appointment as Personnel Manager I went worked my way through further selection processes and became the Finance Manager.

After being rejected as Personnel Manager and taking up the Finance Manager role I proved over time that I wasn’t a liability and was later promoted to Regional Operations Manager. Later in my career there was an occasion where due to a pending retirement a vacancy for a very senior state management position was expected to occur. Pleasingly the retiring Director who had previously told me he was worried I would hurt myself working when using a wheelchair had become so impressed with my work over the intervening years that he stood up at a function where members of the National and State management teams were in attendance and made an announcement as part of his retirement speech that he believed because of my skills and abilities I should be the first person considered for his position after his retirement took effect.

Based on my life experiences I have found that you often have an opportunity to demonstrate your abilities to people by quietly doing your work well rather than making a scene or causing a fuss.

The influence of ’people ‘who have been there and done that!

Over the years I have spent a significant amount of time in hospital and as a consequence I spent a lot of time speaking with older people who ‘had been there and done that’. Fortunately as a teenager and a young man I had the opportunity to listen to and speak with guys who had been through the war and had come out the other side and chaps who had various physical disabilities but had still managed to make it through very dark times that occurred during the 1940’s and 50’s .

I believe that for me my personal growth and understanding of people has involved listening to people and I guess taking on board a lot of their spirit. I don’t know if that opportunity is available to very many people.

Quite often through my life I have been aware that if I wanted to use my disability as an excuse to not achieve or to not try to do things many people would have been very accepting and happy for me to do that. However, I consider that throughout my life I have benefited greatly from having people around me who believed in me and pushed me so that I always had the attitude and mindset of “You can achieve” and “I have achieved”. Sitting down with, listening to and learning respect for older people who had been through the mill and had achieved things with their lives had a very strong impact on me as a young person.

For example when I was with the firm of Accountants the senior partner who was my boss on occasion spoke with me about his father who had been one of three foundation partners with the accountancy firm and had originally been a marine engineer who lost his left arm in a machinery accident. My boss told me a number of stories about his father who had retired including a story about how his father was playing bowls and had won the regional bowls championship. His father in order to keep himself balanced when playing bowls used to keep a lead weight in the left-pocket of his jacket and had to deal with a protest because the non disabled player who was the runner up to him in the championships had protested that his father had an unfair advantage by having the lead weight in his pocket.

Stories like that enabled me to understand that when you are competing in the “real” world your competitors give no quarter and if it is to their advantage to use your disability against you in order to win that is precisely what they will do. Certainly that has occurred many times for me in the course of my career and on a couple of occasions the underhanded approach adopted by others has enabled them to use me as a stepping stone up their career ladder. However, there is no point in crying foul I simply pick myself up dust off the suit jacket and start again.

What motivates me and brings me happiness

When talking about disabilities it is easy to miss talking about all the positives that having lived my life with various disabilities has given me and I would like to finish our interview by giving a brief overview of just some of the positives having disabilities has brought to me.

In particular my mobility issues have developed my skills in planning, observation, memory, flexibility to quickly change strategies, an ability to identify different ways to complete a task and not to mention the patience needed to achieve a goal. I won’t bore you with the many stories I can tell and examples I can give to support this as a factual statement. However, it will suffice to say that all of these skills impact constantly not only on how I live my life but very importantly for my employers, staff and clients into how I work as a manager.

My listening skills and intense concentration on the content of what people are saying and also conveying with their actions and body language have been developed from time spent in hospital and also as a response to my hearing impairment. Many people spend so much time talking to impress and convince others that they become deaf to what others are really saying. My preference is to listen and observe and then take some real action at a later stage that will achieve what people know they need.

Happiness! Throughout my life the many small things that others either just take for granted or are not even aware of have so often given me a sense of achievement and at times even silently wanting to punch the air in triumph. Things like walking down steps without holding on, standing up for a conversation, opening a ring-pull can, wheeling along a street with a difficult camber, drinking a cup of tea without spilling it, learning to balance on a bike, going shopping on my own then bringing in the groceries and putting them away, having a shower without assistance.

That brings me to my great love of horse riding that thanks to my mum and dad has been with me from when I was a toddler. Riding a pony and later horses has given and continues to give me the opportunity to experience so much freedom and to go places I could never see and experience without being on horseback. After my workplace accident I have required assistance to mount and dismount but the freedom of movement once in the saddle continues. I know many people without disabilities can also get great enjoyment from horse riding.

Many of us can appreciate the thrill that a sportsperson gets from winning an NRL or AFL premiership or winning the Australian Open in either Tennis or Golf, but we can only imagine the feelings that those people experience at the time and the incredible memories that must stay with them for a lifetime. I believe that, as someone with a disability who has always lived life with disabilities and for the past 20 plus years has used a wheelchair fulltime, only someone with a similar life experience can truly know the happiness, joy and sense of achievement I get from riding my horse and the lifetime of memories those rides have given me.

If only most trails in State Forests and National Parks and all rail trails were opened up, even with special permits if necessary, for persons with physical disabilities to ride them on horseback the lifetime experiences this would open up for people with mobility impairments would be beyond imagination.

Mentioning trails I have had the opportunity to wheel many of the new wheelchair accessible walks being made available in towns like Merimbula. If in areas like the Tasmanian high country and similar locations in many other states and towns where boardwalks are in place the boardwalks were widened slightly to suit wheelchairs and were ramped rather than putting in steps it would allow so many more people to experience the wonders of our country.

Throughout my life I have crawled up cliffs, through creeks, over rocks and rapids and along muddy or steep bush tracks but always when doing that I have observed the terrain from the perspective of a person with mobility impairment and over the past decade or so often thought if only the appropriate planning and governing bodies would sit down and listen they could so very easily make much more of Australia’s natural beauty and regions fully accessible and thus truly open up new life opportunities for persons with disabilities.

A recently deceased friend of mine had a saying “being Aboriginal is a reason to achieve not an excuse not to succeed”. I have a similar belief that has been with me throughout my life “having a disability is a reason to achieve not an excuse for not having a go”.